Pain in the Neck

i do not have too much to report. the last few days my neck is getting more stiff. i attribute that to attempting to move it more. there is some swelling at the base of my neck. i have been icing, but i need to do it with more frequency. the incision has also been a bit tender of late. i also attribute that to the muscles under the scar. that is a very uneducated guess.

my intestines have not been cooperating as much as i would like. i will be going in for some additional blood tests ordered by my neurologist and gastroenterologist. i hope the tests will shed some light on my numbness and my Crohns.

i have begun to receive some summery of services/benefits from my stint in the hospital and various doctor's appointments. health care is exceptionally expensive. i am so lucky to have health care. i cannot even imagine having the procedures i did and not having insurance to cushion the blow. i truly hope that the politicians will universalize health care. any major illness and it will ruin a persons life.

How the Time Goes By

it has been a few days since i last wrote. snow, high winds and doctors visits have come and gone. well, the flurries may not have gone. i met with my surgeon last week. let me rephrase that. i met with his nurse practitioner and he came in to admire his stitching work. she was late to work because of the weather. in the waiting room there were exceptionally old magazines. finally, she walked into the room. i had never seen this person before. i was expecting to see Dr. Kennedy. :) i should have known better.

with her southern drawl she asked me a myriad of questions about my symptoms prior to the surgery and what has gone on for the month since i had the procedure. i asked her numerous questions about exercise, returning to work, driving, how much longer will i have headaches and what the severity of them might be, to name just a few. she removed some of the stitches that were sticking out of my neck. she rubbed her hand forcefully over my scar. i have to say it was a bit unnerving. my neck had never had such forceful contact. it is numb and so it gave me a strange sensation that made me quiver. she was impressed with Dr. Kennedy's work, as am i. she stated that i need to wait 6 months to participate in an contact sports. i did not hear that. i am going to go with Dr. Kennedy's original suggestion to wait 3 months to start playing ball again. she indicated that i may start driving if my range of motion with my neck allows me to do that, but only on side streets. she informed me that i may go back to work in three weeks. i am excited yet there is much trepidation returning. the trepidation is around the volume of emails and my ability to be able to be lively in meetings for 8 hours a day. i am sure i will return to form fairly quickly.

after answering all of my questions she went to grab Dr. Kennedy. he came in and looked at the scar. he was impressed. he said that i have to have an MRI in three months and if that has no sign of growth, have another in three additional months. if that one looks good, they will have another one in six months. if that one is negative, i will have them yearly. i should not have to see him again unless thee tumor grows quickly. he also wanted me to set up an appointment to see a neurological oncologist just in case. this physician will take a look at me and might get me into some studies, but more it was to get to know him and if the tumor recurs, he can set up some treatment options with chemo or radiation. all in all, it went well.

If anyone really cares, i apologize for the tardiness of my post

it has been a few days since my last post. i did not want to bore you with the mundane aspects of my life. i have been enjoying the weather. i have been sitting on the porch resting and reading. i wish i could do some planting and cleaning of my yard. it needs it big time. i finished the book Three Cups of Tea. i highly recommend it. i have started the book entitled Miraculous Health. the thunderstorm was fabulous. i truly enjoy storms. it most certainly satisfied.

i was tiring of some of my facial hair. it was itching a bit. i cut a portion of it. you can see that i am looking quite rough. :) it is challenging taking pictures of yourself. i will post one of my scar tomorrow.

i have not been able to sleep well due to my intestines. they have not cooperated as much as i would like with the medication. i hope it will respond soon so i do not have to take steroids. we shall see. i see my surgeon tomorrow. i am anxiously awaiting that meeting. i do not know what to expect from the visit. nevertheless, i hope he will let me know when i can drive and when i am able to return to work. we shall see. i will keep you posted.

For your Amusement

i wanted to give you a glimpse into my new look. i have a side shot, but i cannot get it to rotate properly. here it is. as you all know, i usually keep my hair short and easy to maintain. my situation has allowed me the opportunity to explore my ability or lack there of to grow facial hair. not many of you knew i still had the ability to grow hair on top of my head as well. i still have it. having a beard is not as bad as i thought, but it does not feel like me. i will continue to grow it for a bit longer. i find it rather amusing and it takes minimal effort to maintain. i do need to obtain the proper clippers to make it even easier. my head clippers and razor do not allow me the ability to properly manage my look. we will see how long i keep my hair. i am going to wait until i see my entire scar. some of the steri strips are coming off. once i see it in its entirety i will decide if i should go back to short an easy or attempt to hide the scare with hair. i know my hair will not grow there, but we shall see if i should give myself a fade. enjoy the pic!

i had a headache for most of the evening and morning. it has subsided a bit. i thought i was out from under the headache spell, but i guess it will be something i will be coping with for some time to come.

i watched a wonderful movie today. i encourage you all to watch it. it is called Sharkwater. it is about saving sharks and thus our ecosystem. i do not want to get on my preachy horse about the environment and politics. we are a world in peril and we have nobody to blame but ourselves. we need to be better stewards of ourselves, the land, water and air to assure future generations can thrive. so, i will just encourage you to view this and other documentaries. it is a short documentary but especially powerful. i guess i have always had a love for the ocean and sharks. too bad my experience with Mr. Miller in biology in high school ruined my chances of becoming a marine biologist. i guess i am still harboring a grudge because he did not assist Tony, my friend and lab partner, in dissecting our fetal pig or answering any of our other questions he had about biology. we were both destined to a life outside of science. :)

Overtired

again, i was unable to sleep well due to my intestines. i was able to sleep for a few hours this morning. it looks like everything is back to normal on the sleeping front. i cannot remember the last time i slept though the night before the surgery. it has been years. the inflammatory and pain killers allowed me some solid sleep. i guess those days are over.

i dropped off my stool specimen. i hope to have results by the end of the week. i left a message for my neurologist to see where and when he has scheduled my blood work. i hope he will get back to me soon.

Piecing Healthcare Together

i slept terribly last night. it had nothing to do with headaches. it had everything to do with my crohn's. it is back and in full force. i was up every hour for most of the night. i guess if it is not one thing it is another. this is something i am used to and can tolerate.

my gastroenterologist called me back. we had a wonderful conversation. he is a gentle soul. he agreed to speak with my neurologist in order to integrate treatment. i am sure i will have to set up an appointment in the near future. he prescribed Asacol for my intestines. i have taken it in the past and i do not believe it works well. i suppose i will actually listen to my physicians this time. this may be a bit too much information, but i will tell it anyway. i have to give some stool samples to him as well.

the weather is improving. it was absolutely gorgeous out today. it is about time. spring has sprung!

First Doctor's Appointment After Surgery

i have hot water! the repair guy came early evening and fixed the water heater. the thermostat was the problem. so, i am clean and so are all the dishes that were piling in the sink. what a relief.

i just returned from my appointment with the neurologist. his bedside manner is not the best, but he is good. due to the fact that the tingling in my arms is not constant, he is not that too concerned. he wants to continue to monitor me. he does not know why i am still tingling. finding the tumor most likely had nothing to do with the tingling. he is glad that we were able to take care of that. he is concerned with the fragmentation of care that i have received. i need to contact my GI doctor and ask for all of the blood work i have given over the last 8 years. also, i need to have many additional blood tests done to rule out some other possibilities such as: Vitamin d and B12 deficiencies, MS, Lyme's disease, TB, HLA-B27, FANA, ACE, RPR FTA and CBC. i have no idea what some of these acronyms mean, but i need to be tested for them. i believe they are auto immune type diseases. i have to see him again in six weeks.

Back on Track

i finished the book that i was reading. it felt really good. it took longer then i thought, but it is a milestone. i am now reading Three Cups of Tea by Greg Mortenson and David Oliver Relin. i have a few other books in the queue. i cannot wait

last night i decided not take pain medicine to see if i could make it through the night. bad decision. it took me forever to fall asleep. my head was throbbing but i still did not take any medication. i eventually feel asleep. i am a bit tired. i hope to be able to nap today

it is sad that i am still without hot water. the home plus service people came out at 3:50. they gave me a window between from 8 am to 4. he was here for two hours. he had to call in reinforcements. they informed me that i need a new thermostat. it is three months old and i need a new thrmostat? that is ridiculous! the part will be couriered over sometime today. once i receive it, i have to call home service plus over to install the part. i hope the part comes early. i really need to shower.

Still a Day Late

I awoke yesterday with a mean headache. i continued to sleep and when i woke up, the headache had subsided. i got up and read and relaxed. as always, i ate a ton of food. i have a voracious appetite. if there is food in my general vicinity, i devour it. although i have tons of fruit and other healthy items, i tend to gravitate toward the chocolate and other sweets. i wish i could do something athletic even though i do not have the energy or stamina to do anything remotely athletic.

i did go out grocery shopping yesterday. it was my first shopping foray since the surgery. it was nice to get out. i wish i could have walked around outside, but it is a little too cold for that. i hope to get out for a walk today.

last night, my water heater pilot light went out. i was unable to restart it. i just purchased a new water heater in January. they could not come out last night even though i have home service plus. they said they would come today between 8 am and 4 pm. they have not arrived yet. i am sure they will come close to 4. needless to say i am a bit ripe not being able to shower in anything besides cold water. as a result of the water situation, i will be sitting on the couch. i guess i would be doing that anyways. :)

I Cannot Get Caught Up

i realize that my blog is stagnating. i guess my life is just not that interesting. i will plod on and give you updates. i wish i had more excitement to share with you. this is all i got. :)

yesterday i awoke to a brutal headache. i slept in and relaxed. thankfully by late afternoon, my head was feeling better. i took a shower and washed my hair. it felt so wonderful lathering my head up. i am able to get the incision wet. the incision feels numb. my neck is extremely stiff. i need to increase my range of motion by doing simple head movements. i hope that sensation goes away. we shall see. i also attempted to read a book. low and behold i was able to read a couple of chapters of Come on People by Bill Cosby and Alvin Poussaint. it felt wonderful to actually read more then a few page article. it did take its toll. by the bedtime, my headache returned but it was worth it.

i awoke this morning to a healthy amount of slush on the ground. i cannot believe the weather. i was expecting to be able to sit outside and read. that most certainly is not going to happen anytime soon. i feel good this morning. too bad the weather will prevent me from taking a walk. i was hoping to walk the dog this morning. it has been a few days since i have taken a walk. i need to get more exercise.

Still a Day Behind

yesterday was a lazy day. i was incredibly tired. i slept well. actually, i have been sleeping fairly well excluding this past evening. getting out of bed was a chore. i was greeted with some not so good work news. it made me want to stay in bed. as the day went on, i came to terms with it. today is a new day.

i want to thank everyone again for all of the support. it means so much. thank you. i am so blessed.

i have scheduled an appointment with my neurologist for Tuesday of next week. i hope Dr. Dahlquist will be able to shed light on the tingling in my arms and legs. i spoke with his nurse and he was livid that my surgeon did not keep him in the loop about my surgery.

A Day Behind

i apologize for not posting anything yesterday. i did escape the confines of my house. i went over to my brother's house and hung out with my niece. she is doing much better. other then that i slept most of the day. it was so dreary and i was tired as all get up. it was a mix of just being plain old tired and having a headache that you want to escape and sleep was the logical solution. at least the headache is not like the melting helmet. that was brutal. the one i have currently reminds me of someone pulling the two hemispheres of the brain apart. i am still tired. i could sleep all day. we shall see what i end up doing today

my Holter monitor was just dropped off. a physician will take a look at the data. if they find something startling, they will let me know. if not, they will contact me in a week or so. i truly believe they will find nothing. my low heart rate is natural and was reduced a bit further because of the manipulation of the Medulla.

i still have tingling in my arms and fingers, but it is intermittent. i did have some tingling in my legs and toes yesterday. that was a bit surprising. we shall see if that continues. my wound is not weeping anymore. that is great. i cannot wait to be able to wash the wound. maybe that will happen this week. i am not going to hold my breath.

Not Much To Report

it was a non eventful evening. i had and still have a headache. the Holter monitor did not prevent me from sleeping. i did not sleep through the night, but it was much better then the melting helmet sensation from the night before.

i just removed the Holter monitor. it is nice not having anything connected to my chest. i am still tired and am winded easily. all in all, i am a lucky person.

i expect to log in some serious hours watching basketball tonight. my appetite is ferocious. i cannot stop eating. i want to blame it on the medication, but i think it is just the way i am. :)

i hope everyone is enjoying this beautiful day. i want to live vicariously through you all.

OUCH!

i had the most intense headache i have ever experienced last night. i still do not believe i can accurately describe the pain. it felt as if i had a helmet of pain on and it was vibrating or melting pain into my brain. it was the strangest sensation i have ever experienced. i took some pain medication, but it just displaced it. the pain moved from encompassing my entire head to different positions of my brain. my brain felt as if it was a piece of clay that an artist was attempting to remove the air bubbles out of before shaping it. i was trying to find a position in which i could find some relief, but i could not find one. needless to say, it was a difficult evening.

i finally forced myself to get out of bed to get ready to go to the St. Paul Heart Clinic. i have not been very steady on my feet today. i get light headed and dizzy easy. i went to the clinic and they attached this monitor with electrodes to my chest. i have to wear this for 24 hours and document all the various activities i do or do not do during that period of time. it will be fairly simple documentation consisting of nap, eating and taking pain medications.

The Headache Strikes Back

my day was marred with a brutal headache. i have to say that i was expecting to have much more pain then i have had. i cannot complain. i am not sure if i attribute my headache to my attempt to read articles longer then a page or that it was just time for me to experience pain. it made me rest virtually all day. it prevented me from sleeping particularly well.

i do feel good this morning. it looks absolutely gorgeous outside. i hope to venture a few steps outside today. we shall see how that goes. i have this nice new hat/cover up that i wish to sport to protect my wound and to hide my nappy hair. i will take a picture of that as well. it has some cute butterflies on the back as well. it also conceals my hematoma from the frame that was screwed into my head. the swelling has gone down considerably. i have some bruising above my left eye and on the side of my head , arms and on my shoulders. other then that, i am fairly bruise free. i have yet to actually see my incision. it is still covered by steri strips. i do know it is not weeping as much as it did. the swelling is going down as well.

i am still experiencing tingling, but it is not as constant as it was the other day. i believe that to be a good sign. tomorrow i go in to the St. Paul Heart Clinic to get set up with the Holter heart monitor. i will have to wear that for a few days to get some readings. it looks like i will be able to enjoy the sun and warmth that we are supposed to experience tomorrow. who knows how long that will last since it looks like we might get some more snow and rain this weekend. what is up with this place?

i am sitting here writing and eating some fruit and i am disappointed with my inability to open my mouth as wide as i am accustomed. i am sure my mother likes that i am no longer able to open up and shove huge portions of food into my mouth. i am a bit a disappointed in having to show eating restraint. it is my hope that my tongue, jaw and mouth will return to normal. if not, i will be a much more refined eater with no taste buds.

On the Catwalk

Here are some photos. it took me a while to get one of them off my phone. i am also having difficulty placing them where i want them to go on the blog. i am still a blogging neophyte. i hope these images are not too disturbing or risque. the second photo was taken prior to my surgery. they had hooked me up to a few IVs and set up the electrodes on my head to monitor Brain function. i felt like i had a ponytail. it might be inspiration for a future hairstyle. at the time this was taken the anesthesia was beginning to kick in. a few minutes after this picture was taken, i remember the nurses asking my parents to say goodbye. things began to get blurry and i do not remember a thing until the following day. my tongue and mouth are still not the same since they intubated me.

the first photo was taken yesterday. i was about to take a shower. i just wanted you all to know that i still have a sharp sense of style with my bonnet. i am unable to wash my hair or get my neck wet for 5 more days. needless to say, my hair is a bit ripe. too bad i do not have the ability to grow a proper beard. my face looks ratty. i will be calling on all of you to assist me in deciding what type of hairstyle to have moving forward. i will work on some possible options.

i did not sleep very well last night. my mind was racing about silly stuff. i am still experiencing tingling, but not to the extent that i was yesterday. i take that to be a good sign.

D'OH! D'OH! D'OH!

in the words of one of my favorite cartoon characters Homer Simpson, D'OH! it was not a good night before i went to bed and while i was in bed. my niece, Grazina, who is 9 months old was admitted to the hospital with the flu. she cannot hold down food or fluids and has lost weight that she can ill afford to loose. poor thing.

in addition, i found out that Toby Rapson's father Ralph Rapson, the famous architect passed. my thoughts and prayers go out to the Rapson family.

to finish off the trifecta, while i was staring at the ceiling trying to fall asleep, the tingling in my arms and hands returned last night. this was the first time i felt tingling since the surgery. at least it was not in my legs and feet as well. we will see what is going on there after i see my surgeon. needless to say, it was not a good evening. at least in my case i hope that it was just how i was positioned while sleeping. time will tell.

at least it is sunny outside and the snow will be melting away soon. i cannot wait to go outside and take a walk. there are some photos that i need to post that will lighten the mood. i will work on getting those up soon. i believe you all will be amused